One click to support the march against paralysis

One click to Send a message of support to Joe and to major newspapers across the world to let them know what Joe Kals is doing.

Join the Facebook page 'Walking on the moon with Joe Kals'.

Many people don't know Joe Kals, and I didn't either until I read about him walking 1325km from north to south across France - and Joe can't walk. He has been a paraplegic for thirty years. His 1325km trek is being done with braces and crutches.

Joe is raising money and awareness for what many scientists already believe is possible, a cure for paralysis - so that you, and I, and Joe may one day walk across the beauty of France without braces and crutches.
Now that I've told you what Joe IS doing, let me tell you what he isn't doing.

He isn't raising funds and awareness for...
...a more inclusive world for those with SCI.
...a barrier free world so we can ride our chairs wherever we wish.

All admirable things, but Joe is doing this for ONE reason only, "So that human beings can live life without the consequences of spinal cord injury."

Watch our video and send this to your friends, colleagues, and family to let them know that a cure for spinal cord injury IS possible.

Make a donation to Joe by visiting his website at http://www.joekals.com/. The site is in French but click 'faire un don' in the upper left hand corner. All money raised will be donated to the French organization ALARME which is 100% dedicated to a cure for spinal cord injury.

Keeping a cure for spinal cord injury in the media

I would like to thank you all of your for responding to my call for letters to the Chronicle Journal regarding their story about the Rick Hansen Relay.


In today's edition my letter was published and I will send another letter asking that they follow up on the story of the Rick Hansen Foundation's spending (or lack of spending) on funding for translational research on central nervous system regeneration, i.e., a cure for spinal cord injury.


We're starting to see the results of all asking and demanding together.


I will also follow up with them to see if they are interested in writing a story about a cure for spinal cord injury and why the Rick Hansen Foundation should be funding this.
*************************************
Published in the Chronicle Journal 'Letters to the Editor'

Spinal cord research

Friday, January 13, 2012

Thank you for your story regarding the Rick Hansen Relay (Rick Hansen Still Makes a Difference —CJ, Jan. 9). Hansen has done a lot to promote accessibility and acceptance for those of us living with spinal cord injury and paralysis.
As you may know, regeneration of the central nervous system (CNS), i.e. a cure for spinal cord injury, is very clearly on the horizon. A cure is one of Hansen’s stated goals.
Researchers from all over the world are working towards this goal and animal studies clearly show that the spinal cord can be regenerated, meaning that the paralyzed may someday walk again. One of the things that is holding this bold effort back is funding for research, specifically clinical trials.
As your article mentions, $245 million has been raised by Rick Hansen in the past 25 years and more money is being raised by this relay across Canada. This makes the Rick Hansen Foundation one of the biggest, most well-financed foundations dealing with spinal cord injury in the world.
Concerned about the lack of any specific mention regarding research funding for CNS regeneration, almost 300 people have written to the Rick Hansen Foundation asking for information about its spending in this area. Sadly, there has never been a clear answer to this question.
While I wish Rick Hansen success in this relay, I also ask that funding for CNS regeneration become the priority that he says it is.
Dennis Tesolat
(originally from Woodstock, Ont.)
Osaka, Japan

Send a letter to the Chronicle Journal about the Rick Hansen Foundation

The Monday, 9 January edition of the Chronicle Journal (Thunder Bay) ran a story about the Rick Hansen Relay going through the Thunderbay, Ontario area (http://www.chroniclejournal.com/content/news/local/2012/01/09/rick-hansen-still-makes-difference). The goals of this relay, retracing the steps of the original Man in Motion tour wheeled by Rick Hansen across Canada twenty five years ago, is to raise both awareness and money.

The article goes on to state that in twenty five years $245 million dollars has been raised, but when 300 people wrote to the Rick Hansen Foundation asking how much of this money has been spent on a cure for spinal cord injury, we were greeted with a message that didn't answer the question.

You can find all our questions and answers at http://stemcellsandatombombs.blogspot.com/2011/09/q-with-rick-hansen-foundation.html

Send an email to the Chronicle Journal and ask them to follow the real news behind the Rick Hansen Foundation and what they are doing to achieve a cure for spinal cord injury.


Campaign closed. Please see 

Keeping a cure for spinal cord injury in the media

From Italy with love

Spinal Cord Injury MUST become curable! English Version

La Lesione Spinale deve diventare curabile Italian Version

¡¡¡ La Lesión de la Médula Espinal debe ser curable!!! Spanish Version

Sometimes I say stupid things...but not about cure

I'm having one of those really good days today. When I say really good day, I don't mean that I can walk or anything. Good days for me is when I don't suffer from really high spasticity, the burning of pins and needles in the lower half of my body, and sharp pains that shoot through my hips. And this was today and that's when I said a really stupid thing.

I said, "God, if you just let everyday be like this, I'd be happy."

But you know what? It was a lie and it was stupid. I know it and God knows it. I want the full function of my body back. The same cure that many scientists believe possible and that animal studies show is a real.

Let's face it. The second I got rid of the pain and spasticity which can be done with some drugs, I'd want my bladder, bowel, and sexual function back, and after I was tired of just peeing normally, I'd want to walk. It's not selfish. It's not 'not being satisfied' with what you have. It's human nature to want progress, especially when science says it's possible.

We are often told of the great strides we have made in the world of paralysis. People with paralysis used to die quite early. The paralyzed had constant bladder infections which killed them. And these things have now been controlled.

But how many non-paralyzed people are happy just because they're not dead (except for my mother who would constantly tell me to be happy I was alive) or don't have a bladder infection?

These gains are not real gains if we’re alive but basically told to “shut up, sit down, and stop hoping for a cure”. It would be like telling the non-paralyzed to strive for nothing except what they currently have. Human society would come to a halt if everyone took that attitude.

It reminds me of surveys (stupidity #1, stupidity #2, the biggest stupidity) of quadriplegics and paraplegics that are rolled out by the opponents (yes, I use the word OPPONENT) of a cure every time we say we want to walk.

The polls says that most paraplegics put a priority on regaining sexual, bowel, and bladder function in that order, NOT walking. But guess what, as soon as we got those things, we're going to want to walk.

For high quadriplegics the poll says that the priority is on breathing without a tube, NOT hand function. But I promise you that the second they can breathe on their own they are no longer going to be satisfied with just this. They're going to want to move their fingers, pee on command, AND run a marathon.

These are examples of us being 'uppity';)

If you're not paralyzed and you're reading this, ask yourself; are you happy just because you can breathe?

These polls/studies, run by foundations for the paralyzed, WASTED money on them, and are telling scientists and us the paralyzed and non-paralyzed that we should settle. But that's not human nature.

The non-paralyzed can walk, so why were things that let us swim like the fish and fly like the birds invented?

The non-blind can see, so why were devices that let us see millions of kilometers into space invented?

And guess what?

 The inventors were often told that they were crazy. That their inventions would never work.

And that's what every foundation for the paralyzed that tells us to be happy we're not dead is telling me and you. That a cure is impossible and those who work for a cure are crazy.

But it's not true and I have science on my side in this argument and it ain’t just me who says so.

I leave you with the words of Dr. Wise Young on a recent talk in New Zealand.

Dr. Young is the founding director of the W M Keck Center for Collaborative Neuroscience and a professor at Rutgers, the State University of New Jersey and is currently conducting clinical trials in spinal cord regeneration.

“It’s achievable not just within our lifetime, but within a few years. I believe we can fix a person enough so that someone who doesn’t know them wouldn’t know that that person has a spinal cord injury. To me that’s a cure!”

Skydiving? Why in the hell would I go skydiving?

I hope that you and all of yours have a wonderful 2012. I would like to leave you with my favourite post which was written in November 2010 and to let you know that this is still exactly how I feel. Let's ring in 2012 with a new enthusiasm for a cure for paralysis. 

Day one after the cure.

It's 7:00am and already the kids are buzzing about my head on the first floor. Singing Japanese songs that I am vaguely familiar with and then they begin to demand that I play with them. So I do.

Leaping from my futon, actually you don't leap from a futon on the floor (tatami to be exact), I roll over and get up. I shew the kids away and tell them to give me fifteen minutes. I go out the front door, get the paper, grab my cigarettes, and head to the washroom where I can read the paper and smoke for a few minutes in peace and quiet.

After I've had these few minutes, it's time to get breakfast going on the second floor. I ask the kids how they want their eggs done. "Hard boiled," answers one, "sunny-side-up," answers the other, but I tell them to decide ONE way to make their eggs and I'll agree to whatever. They engage in a quick round of janken (paper-scissors-rock), and Luca, the oldest, wins. Sunny-side-up it is.

Eggs, sausages (not real Italian sausages, but little tiny wiener type sausages from Japan), toast (not with olive oil and garlic, but with melted processed cheese), milk, and coffee for me. It's time to eat, but for Luca and Lio, it's time to fight about every egg, wiener, and slice of toast. I holler, and that calms them down. Finally we eat.

Next battle. It's Tuesday morning, during Obon holidays (that's when the dead come home in Japan and we have a week off to welcome them back), so I don't want to waste the day. "Brush your teeth, and get dressed." Again I win and they're off to the third floor to get ready. For me, it's five minutes of peace with which I run out to the balcony with the remainder of my coffee and newspaper, and cigarettes to grab a moment of peace.

"We're done." They come racing down the stairs and get ready to play in the street. I wonder if they'll now leave me alone, but looking at the deserted street below, I see that with no other kids, they'll soon be beckoning me, and I'll be happy.

All three of us now in the hot August street playing the Obama game. Interesting game it is. It used to be called the Osama (not the Bin Laden kind) game. Osama means king in Japanese and in this game you move up levels until you are finally the king. We named it the Obama game after the American elections.

We play for about one hour until we are all drenched in the Osaka sweat that goes along with the humidity and then all agree to go back into the house and the air conditioning. I hope that it's done, but my wife, who hasn't yet been out in the open heat, declares that we're going to Konan, a neighbourhood home centre.

Despite the fact that the heat is stifling, I'm quite happy to go. I want to get some wood to build shelves in the pantry, pick up some new plants, a new potter for my olive tree, and buy whatever else these places offer. Konan is great, but the bike ride to get there is HOT!

Finally there, we buy all the stuff we need, and don't need, and then head out to the parking lot for icecream. I wish that there was a beer for me, but there isn't, and even if there was, my wife is not going to let me drink beer at three o'clock in the afternoon.

We get home after the long bike ride up hyakuenbashi (one hundred yen bridge), and just when I'm ready to start relaxing and drink a beer regardless of whomever objects, we decide to go out yet again. This time forokonomiyaki which is like...I don't know what it's like. I ate okonomiyaki my first day in Japan and was told that it was a Japanese pizza. Well, it's not a pizza, it's more like a pancake full of chopped cabbage and slices of pork. Whatever, it's delicious and we eat it.

Oh, I forgot something. Before we go to eat okonomiyaki, my kids decide that it would be great to go to thesento (public bath) after we eat, so first we got to get our clothes and towels. I don't know if any of you know what a public bath is, but in Japan I go often.

It's basically a place with great big baths and showers along the walls. Great big tubs of steaming hot water, some inside and some outside, along with saunas and massage chairs. It's great and if you can learn to get naked with a bunch of guys, you'd soon learn to love it, as I did.

So after the okonomiyaki, me, Luca, and Lio are sitting up to our necks in hot steaming water outside. It's great, but I forgot the real reason for their insistence. The public bath I go to, Shintokuyu, has a lounge area with ice cream. So even though I want to stay and soak in the boiling water, I get out and satisfy my kids' desire for ice cream. I'm lucky though, because they sell both ice cream AND beer.

I'm beat but on the bike ride back home (about 2 minutes) I realize that I'm missing the most important thing for the end of a great day - MORE beer. We stop at the shop and pick up a few and head home.

We play upstairs in the kids' bedroom on the third floor. I tell them a story and then we say our prayers. 'Our Father', 'Hail Mary', and a host of other prayers said between English, Italian, Japanese, and even Latin. But it wouldn't have mattered if I had said them in Swahili, they're both asleep.

Now, I go back down to the first floor, it's too hot upstairs for me, roll out the futon, crack open a beer, and read myself to sleep. Tomorrow I've promised the kids that we'll go ZA BOOM which is a big swimming pool at an amusement park about thirty minutes from my house.

Sound boring? Not to me.

It's actually what I did the day I became paralyzed. That day, I only got to the futon part on the first floor before the pain started and I was rushed to the hospital, leaving my kids to be worried about their father AND why they weren't going to ZA BOOM.

For me, the first day that I get back my freedom, I wish to relive the last day without the pain that started this all (and hopefully without the cigarettes). Then I want to finish up my Obon holidays and head back to teaching and the union, and do it standing.

That's all.

I remember my first session of rehab three days after my operation. The physiotherapist, who was a really nice guy, told me about how people in wheelchairs climb mountains, go scuba diving, parachuting, and travel all over the world.

I thought to myself, "This guy is crazy." He was talking about my new enjoyable life in the chair. Why in the hell would I want to go scuba diving or parachuting from my chair? I never did these things before I got paralyzed, so why would I want to do these things now? I would much rather have had a discussion about new cures that are being researched for spinal cord injury. Instead I got the "life in the chair" talk.

Maybe it's about validating yourself or feeling alive; that you can do these things even if your are in the chair. But I don't need these things to validate that I am alive. I have pain and pins and needles that remind me that I'm alive. I'm not criticizing those who do do these things. Maybe they like it. Maybe they used to do it. Maybe they started doing it after they were paralyzed.

All I'm saying is that I would rather spend my time trying to make the cure a reality rather than ski down a mountain in my chair. I don't need amusements, because life in the chair is not amusing.

When they tell me that there is no hope whatsoever. When all the research shows that curing spinal cord injury is impossible, I might then decide that scuba diving is something that I really should get in to.

Cats eating mice at Geron

This blog post has taken me a long long time to write. One reason was of course my operation which knocked the wind out of me, but after hearing that Geron (the first company in America to win clinical trials using embryonic stem cells to treat spinal cord injury) was abandoning its clinical trials, I had to do a lot of rethinking about the best way forward to a cure. Oddly enough, it brought me back to a story called 'Mouseland'. Here I go.

The headline in the 21 November 2011 Los Angeles Times explains the whole story best:

Economics, not science, thwarts embryonic stem cell therapy

But I can sum up the story even easier - cats eat mice.

I was informed about this story by a reader who felt devastated by what she felt as "Geron abandoning me and others for profits."  What made it worse was that it wasn't abandoned because of concerns of the science or the safety, but simply because Geron did not see any potential to make money off these cells to treat spinal cord injury in the near future. Fair enough, cats don't chase mice for fun, they do it for food.

But oddly enough, I didn't feel let down by Geron. Me criticizing Geron for this would really be like criticizing cats for eating mice. Geron is a private company and the goal of a private company is to generate profits for their shareholders. If they can do it by curing paralysis that's great, but in Geron's case they decided that they could make more, and more quickly, with cancer drugs (more people have cancer than spinal cord injuries). Let me also be clear, I don't think that the people at Geron are bad, but in the end, they did what cats do, they ate the mice (in fact they first cured mice of spinal cord injuries), meaning that they did what was natural - they moved into a better position to make money.

I'll admit it though, in the absence of understanding how we can move research along to cure paralysis without depending on private profit, I secretly cheered for the cats at Geron against my better judgment and against myself, one of the mice.

Well, their abandonment of these trials made me have to sit, think, and search for another way forward that is more in line with my own thinking. And then I found an article that articulated what I always knew and felt.

The Horrifying Hidden Story Behind Drug Company Profits (Huffington Post: 4 August 2009)

While the story is not about curing paralysis it is about how the patent system stops people in the poorest countries from getting medicines they need simply because of profit and why we aren't always best served by profit. Furthermore, it articulated something that I had always thought about the role of pharmaceutical companies in making new medicines.

"Our governments have chosen, over decades, to allow a strange system for developing medicines to build up. Most of the work carried out by scientists to bring a drug to your local pharmacist -- and into your lungs, or stomach, or bowels -- is done in government-funded university labs, paid for by your taxes. Drug companies usually come in late in the process of development, and pay for part of the expensive but largely uncreative final stages, like buying some of the chemicals and trials that are needed. In return, they own the exclusive rights to manufacture and profit from the resulting medicine for years. Nobody else can make it."

But still there was no answer in regards to how to change the current system of creating new medicines or therapies.

"But a detailed study by Dr Marcia Angell,the former editor of the prestigious New England Journal of Medicine, says that only 14 percent of their budgets go on developing drugs -- usually at the uncreative final part of the drug-trail. The rest goes on marketing and profits. And even with that puny 14 percent, drug companies squander a fortune developing "me-too" drugs -- medicines that do exactly the same job as a drug that already exists, but has one molecule different, so they can take out a new patent, and receive another avalanche of profits."

"As a result, the US Government Accountability Office says that far from being a font of innovation, the drug market has become "stagnant." They spend virtually nothing on the diseases that kill the most human beings, like malaria, because the victims are poor, so there's hardly any profit to be sucked out."

This did get me thinking about spinal cord injury. The market to cure malaria is huge, but the victims are poor so they don't get a drug to cure malaria because no one will make much money of it. In terms of paralysis, even though it also exists in 'rich countries', the market is too small to warrant massive investment.

But these criticisms didn't give me a new understanding or show me away to make sure that I could back the mice to cure the mice. Luckily I kept reading and found what I was looking for at the end.

Today I will leave the story at that, but have a look at the end of the article and I'll continue very soon as I'm excited about this very interesting idea as it has the potential to unite people from many different disease groups with regular people who pay taxes into a very strong group of people who could make a change that affects my life and my pocketbook. 

Go mice!